In children and youth with chronic illness, there is a very strong emphasis on promoting independent self-care as soon as possible, and this appears to be equally true among healthcare providers and families. Studies suggest that parents tend to view age 12 as the time that most children should be able to take over many illness-management tasks (Vessey and Miola 1997), and pediatric providers tend to believe that self-management education should begin even earlier (Geenen et al. 2003).

There is a lot of evidence that 12 is seen as a “magic number” when it comes to transferring responsibility for illness management from the parent to the child. This is the age that has been found in studies of children with T1D (Wysocki et al. 1996), transplant patients (Shemesh 2004), and asthma (Orrell-Valente et al. 2008). In the study of transplant patients, primary responsibility for medication adherence fell to 30 % of children age 9–10 years, 50 % of children age 11–12, 65–70 % of children age 13–16, and all children 17 and older (n = 81) (Shemesh 2004). In children with HIV, one descriptive study found that one quarter of patients age 8–18 reported having full responsibility for their own medication, and this percentage increased with age (Naar-King et al. 2009).

Twelve is also the age that many writers believe the process should begin for preparing youth for transitioning into adult healthcare. A recent study involving focus groups and interviews with 143 young adults with special health care needs, their family members, and their healthcare providers concluded that preparing youth for transition “should start in childhood or at the time of diagnosis,” and that “providers can help to facilitate transition by encouraging families to envision their child’s future and promoting medical independence” (Reiss et al. 2005).

The influence of these beliefs about fostering “medical independence” has extended into practice recommendations. Current American Academy of Pediatrics (AAP) guidelines recommend that transition planning for youth should begin at the age of 12 years, and possibly even sooner for children with chronic illness (Cooley et al. 2011). Of course, transition planning is different from transfer of responsibility, but the report also recommends that “parents/caregivers must view the youth as the driver in the process and encourage the youth to assume increasing responsibility for his or her own health care to the fullest extent possible” [emphasis added].

Underlying this recommendation is the belief that early adolescence is “when youth become developmentally capable of engaging in activities regarding their personal futures.” The evidence we reviewed in Chap. 6 would argue against this, however. Adolescents may be intellectually capable of self-care but many lack the social-emotional maturity and self-regulatory capabilities to be successful in daily management of a chronic illness.

As the authors of the AAP report note, the guidelines are based on “expert opinion and consensus recommendations” given the lack of sufficient outcome data about transfer of care. However, there are extensive outcome data on premature transfer of responsibility.

Consider children who have received liver and other organ transplants. It is well known that medication nonadherence is the single most common reason for premature graft loss in adolescents (Dobbels et al. 2010; Oliva et al. 2013; Shemesh 2004), and adolescents who have primary responsibility for medication adherence are more likely to be nonadherent than those whose parents are responsible (74 vs. 56 % in one study; Simons et al. 2009).

Encouraging transplant patients to be responsible for their medication at an early age would therefore seem ill-advised. However, this is what appears to be occurring at some major pediatric medical centers . A recent article in the Wall Street Journal reported that at Mount Sinai Hospital in New York, parents of liver transplant patients are encouraged “to start letting their children be responsible for taking medication from the age of 10 or so” (Whalen 2014).

Unfortunately, such well-meaning attempts to foster greater independence in pediatric patients have the potential to backfire.

The finding that adherence and illness control decline when parent involvement decreases and youth assume more independent responsibility is not specific to pediatric transplant patients. Instead, this is a pattern that has been observed in many diagnostic groups, including asthma (Bender et al. 1998; Duncan et al. 2013; Fiese and Wamboldt 2003), type 1 diabetes (Anderson et al. 2002; Holmes et al 2006; Lewandowski et al. 2007; Lewin et al. 2006; Wysocki et al. 2006), and HIV/AIDS (Mellins et al. 2004; Williams et al. 2006; Naar-King et al. 2009), among other conditions. Moreover, a decline in parent involvement and shift in responsibility can be especially calamitous for youth who are already struggling with adherence (Seiffge-Krenke et al. 2013).

There are benefits to involving youth at the level at which they’re ready, although true readiness can be very hard to determine. Moreover, there can be costs to giving youths more responsibility even when they’re ready for it. Wysocki et al. (1996) examined self-care responsibility in children ages 5–17 with type 1 diabetes as a function of their assessed psychological maturity. Controlling for age, the children and youth were divided into three groups; youth with:

The findings are instructive. The group with excessive responsibility did most poorly on every measure, with significantly more hospitalizations than the other two groups, worse adherence and glycemic control, and worse diabetes knowledge. It has been argued that giving children more responsibility results in better disease knowledge, but this did not prove to be the case here, possibly because these youth lacked the parent feedback necessary for effective learning. Having an appropriate level of responsibility resulted in better developed diabetes knowledge than either having too little or too much responsibility, but this came at a cost of having more hospitalizations than youth with less responsibility (although fewer hospitalizations than the excessive responsibility group). Thus, high parental monitoring likely helped keep children with less responsibility out of the ER. (The groups with appropriate and too little responsibility both had good adherence and glycemic control.) Taken together, these findings suggest that maintaining a high level of parent responsibility may be the best short-term strategy with regards to illness control and child safety, although it may not adequately prepare youth for independent self-management.

Despite all of the empirical evidence, many healthcare providers remain resistant to the idea of encouraging a high level of parent involvement in youth’s chronic illness management (Weissberg-Benchell et al. 1995). There appear to be many reasons for this. Ironically, the movement toward patient-centered care, which has transformed adult medicine for the better, may inadvertently reinforce the idea that children need to become independent in self-care as soon as possible. Patient-cantered care emphasizes “individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (Institute of Medicine 2001). This focus on individual preferences and needs is crucial for good adult care but leaves little room for the family involvement so necessary in pediatrics .

From a practical standpoint, there is also the reasonable concern that preparing youth for independent management in later adolescence (i.e., age 16–18) will simply be too late (Cooley et al. 2011). We agree. The question, however, is whether promoting independence from an early age is the best way to prepare youth, an issue we will take up further below.

Complicating the sharing of responsibility between parent and youth is that it is not always clear who is responsible for which aspect of illness management, which creates “diffusion of responsibility” and clear problems for illness management (e.g., Anderson et al. 1990; Dashiff 2003; Martin et al. 2007; Wade et al. 1999). Even worse, in some cases youth simply may not step up to take over the tasks that parents stop doing (Walders et al. 2000). These findings point to a failure or breakdown of communication as a likely impediment to successful collaboration (Wysocki 1997)

Family preferences for adolescent independence may also drive the move toward independent self-care (Reiss et al. 2005). Adolescents themselves push for more independence and autonomy as a matter of course, and many parents grow tired of fighting with them over these issues. Adolescence is characterized by increased parent-child conflict and decreased closeness and time spent together (Steinberg and Morris 2001), so maintaining parent involvement can be quite challenging, and healthcare providers may give up hope of seeing their patients and parents get along. Parents may also disengage from illness management if conflict results, despite the fact that this sort of conflict is normal and may actually be an important way that parents and teens renegotiate their relationship around self-care (Holmbeck 1996). Interventions that have focused on teaching families conflict management skills have proved to be an effective way to promote family “teamwork” in children with different chronic illnesses and their parents (Anderson et al. 1999; Duncan et al. 2013).

Even when parenting is positive and effective, and results in good immediate outcomes, many people remain concerned about the longer term effects on youth development. Specifically, there is the concern that a high level of parent input may foster a level of dependence in youth that would serve them poorly when they make the transition into early adulthood, when they will have to (sooner or later) take over independent management of their care. Indeed, there has recently been a groundswell of popular literature decrying over-parenting and warning parents about smothering their children—so-called “helicopter parenting” (Schiffrin et al. 2013).